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Hello, I'm New And I'm 90% Sure I Have Celiacs.

Rob Amsterdam

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Rob Amsterdam Newbie
Rob Amsterdam
Posted

Hello I am a 30 year old male and only recently awakening to the fact I might have celiac's disease.

 

As a kid I always was senstive to bad foods, I hated birthdays because they would make me tired and feel sick. It was an association I made in my head, but now it becomes clear it wasn't the birthdays but the bad foods.

 

When I was older I developed acne which became worse and worse, at the age of 16 I became sicker and sicker and when I was 18 I was diagnosed with 'Autoimmune hepatitis' the doctor put me on prednisone for more than a decade. I had psychological problems, "derealisation" anxiety depression, couldn't gain weight. Was tired all the time despite my liver numbers being back to normal. I got off the steroids and developed the most horrendous eczema anyone would ever think. Months later my liver numbers would flare up and I was put back on prednisone. This repetative thing went on for 12 years.

 

In 2012 things got worse, Each night I would lay awake with pain, I couldn't sleep until 4am in the morning. I medicated with cannabis oil to get me to go to sleep.

 

Doctors ran so many tests they told me my liver was ok, and it was all psychological. I lost around 15 kilograms (40lbs) in 2 months and I thought I had cancer and was dying, I has blood in my stool every other day and mucous every day, my nails turned pale, my hair fell out, both body as head. Lost my job, my apartment had to move back to my parents, and was almost submitted in a psychiatric clinic.

 

I had an endoscopy and all kinds of ultrasounds and MRI's and everything was negative for pathologies. Even negative for celiacs disease.

 

Last year I was diagnosed with subclinical hashimotos, with elevated TSH and normal T4.

 

I was constantly dizzy anxious depression, unable to think clear and unable to gain weight.

My calves armes, buttocks all were covered in eczema after I withdrew prednisone.

 

This was when I tried a gluten free trial.

 

It was like a miracle. My eczema went away so fast, my livernumbers stayed normal despite being off prednisone the stomach pain went away, and the fatigue. I still have the foggy thinking but I guess that might be my thyroid or the medication I take for my thyroid. I am hoping that I can withdraw that too in the future.

 

I'm so thankful for figuring this out, I think it has saved my life.

 

But I am puzzled and a bit disappointed in doctors that they weren't able to diagnose me with all the tests theyve done. It's been a long journey but I can see the light!

 

Just wanted to share this.

 

Rob

 

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kareng Grand Master
kareng
Posted

Steroids can mess with the Celiac blood tests.

Open Original Shared Link

If eating gluten-free makes you feel better, that is what you should do.

BlessedMommy Rising Star
BlessedMommy
Posted

 

 

If eating gluten-free makes you feel better, that is what you should do.

 

I agree. If you've exhausted all testing options to no avail, then it's fine to follow a strict gluten free diet, if that's what works to keep you a symptom free member of society. Nobody needs their doctor's permission to go gluten free.

Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Thanks for the replies.

 

I have been trying to raise more awareness in Autoimmune hepatitis forums and facebook groups, that at least a significant percentage of people can have celiacs disease as the root cause of their liver disease.

The medication normally used for liver diseases is quite taxing and can have a lot of side effects, immune suppressants and steroids.

 

Many doctors and herpetologists don't always connect all the dots, but literature is quite clear on the subject that AIH can be put or kept in remission with a gluten free diet.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the replies.

 

I have been trying to raise more awareness in Autoimmune hepatitis forums and facebook groups, that at least a significant percentage of people can have celiacs disease as the root cause of their liver disease.

It would seem like they would be more aware of the connection since it is not unusual for us to have wonky liver panels prediagnosis. My doctors were convinced I drank but not admitting it to them. My panels went back to normal after a time gluten free. If we had known the connection sooner perhaps my brother would still be with me as his liver was gone by his midteens.

Thank you for trying to educate those with AIH. I hope they listen and at least get tested. 

etbtbfs Rookie
etbtbfs
Posted

Guess things havent improved all that much. Took 12 years to diagnose me, and that was from a naturopath.

nvsmom Community Regular
nvsmom
Posted

Welcome to the board, Rob.  :)

 

That's a shame that doctors did not connect the dots for you years ago.  Liver disease is not uncommon among celiacs... they really dropped the ball there.

 

Chronic liver disease can actually cause a false positive tissue transglutaminase test (tTG IgA or tTG IgG) ... they really should have caught that.  :(

 

Glad you are feeling better and have taken steps to improve your health.

 

Oh hey, maybe post your story about the link between liver issues and celiac disease in the Related Disorders and Research board on this forum.  I'm sure it will help others someday.

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Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Thank you guys for the replies. There's a lot for me to digest -pun intended- but for now, being gluten free is pretty awesome, I have slept 5 nights in a row now without any pain or discomfort, it's amazing. I hope the brain fog will lift soon as well and I can pack on a few more kilo's/pounds cause I'm around 15kg below my ideal weight.

 

And ravenwoodglass so sorry to hear you have lost your twin brother to AIH when you were younger, I cannot imagine what kind of impact this must have had on you and your family's life.

 
MomBTired Newbie
MomBTired
Posted

You get a skin biopsy done?

  • 2 weeks later...
Rob Amsterdam Newbie
Rob Amsterdam
Posted
  • Author

Hi I just wanted to give an update.

 

It's been 2/3 weeks now on a strict gluten free diet and I feel amazing, I feel completely normal. Haven't had any more pain and the dizziness and brain fog and anxiety and depression went away completely.  :D

BlessedMommy Rising Star
BlessedMommy
Posted

Good for you! :) Nobody needs permission from their doctor to eat gluten free! It sounds like it is really working for you! Great job!

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